Thoughts on life, disability, and the power of connection.

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Food for Thought

Food for Thought – November 30, 2015 Notebooks for Peace “We look through the notebook we see all the work that they did and these are notebooks that will never be filled by kids who were killed,” Slate stated. There was Room at the Inn It has come to my attention that ever since Caesar’s pesky census drew thousands to the city of Bethlehem, rumors have been circulating around the region that my inn is...

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When Gratitude is Practiced

I started taking yoga this year and I look ridiculous. I chose yoga because, no joke, it was the cheapest excercise class I could find. It was weird and uncomfortable at first and I rolled my eyes at all the breathing we did and the nap we take at the end. And speaking of cheap, do I really need to pay someone to tell me to breathe and nap? Apparently, I do. On the inhale, move. It turns out...

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When Gratitude is Hard

Reposting because this is still one of my favorites. Also because we sang these same songs again at my concert last weekend and they felt redeemed…. ******* In response to all of the people who say, “I don’t know how you do it…” First, you could do it too. You’d rise to the occasion, just like I did. Second, you are doing it, whatever it is right now, whether it be crippling anxiety, a season...

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Epilepsy Awareness Month

November is Epilepsy Awareness month. I’m aware every day, thank-you very much. I’m aware that Aidan’s seizures are not nearly as bad as those of our friends, and yet he still gets hurt and his quality of life is most definitely impacted. I’m aware that seizures are not as easily understood as they seem; they aren’t necessarily what you see on TV. Sometimes a strange movement is a seizure and sometimes it’s a strange movement. I’m...

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Food for Thought

Food for Thought – November 16, 2015 University to Employ, House Adutls with Autism New hires with autism could start coming on board by late next year and will be supported by clinical staff and graduate students, officials said. In addition to working on campus, those in the program will participate in life skills training and recreational activities. When she is five she’ll talk, right? But I guess more than that, there is an aspect...

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Notes from an Old Mom

We all know 40 is the new 30 and math is sometimes ridiculous and unhelpful, right? So I’m not really an old mom but I have learned a few tricks in my time with Aidan. When Aidan was little I blogged mostly for therapy and a little bit to help the world open their minds to my son. Now I think I blog to help, to connect and find those other people along the way...

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Food for Thought

Food for Thought – November 2, 2015 Everything Doesn’t Happen for a Reason So I’m going to repeat a few words I’ve uttered countless times; words so powerful and honest they tear at the hubris of every jackass who participates in the debasing of the grieving: Some things in life cannot be fixed. They can only be carried.  I’ve grieved many times in my life. I’ve been overwhelmed with shame and self-hatred so strong it’s...

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Happy Birthday

It’s PURA Syndrome’s first birthday. It seems like a strange thing to celebrate – “Hey, I know why my kid is sick!” Before Aidan’s diagnosis, as in, for the first 13 years of his life, we found things to celebrate even when we were struggling. It’s a matter of survival. I believe the Medical Mom’s eye is trained on good things. We got into our groove of living without a diagnosis for Aidan, still feeling...

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Food for Thought

Food for Thought – October 26., 2015   AAC: Don’t demand prerequisite skills In the last few weeks I have heard from several different teachers that they have been told by others that their student “isn’t ready for symbols”.  I am always shocked that anyone can still say this in 2015 when we moved away from a candidacy model for AAC around 20 years ago. Of Tears and Terrible Sounds (When life is too painful...

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You Just Bought Speak For Yourself. Now What?

Welcome to the AAC Family! Congratulations on getting your brave on. It’s ok to feel overwhelmed, excited and nervous at the same time. Here’s what I wrote about starting AAC with Aidan. Some of you may be starting this journey without the support of your SLP or education team. I’m so sorry to hear that but here’s my two cents. Yes, professionals bring experience and knowledge to the table but you are driving this bus....